Experiences of traumatized mothers caring for their thalassemia children after the earthquakes in Turkey and their expectations from nurses: a qualitative study

BackgroundThalassemia is a chronic disease that significantly affects both children and their families physically, psychosocially and economically. Earthquakes are known to disrupt community living standards, cause serious health problems and deaths, and have a greater impact on the health of children with chronic diseases and their caregivers. It is important to reveal the experiences specific to the disease in order to improve post-earthquake care and support processes.AimTo explore the experiences of traumatized mothers caring for their children with Beta-Thalassemia after the earthquake and their expectations from nurses.MethodsThis study used a qualitative exploratory research design with a phenomenological approach. A total sample of 20 mothers with varying experience participated. Data were collected in a pediatric hematology/oncology ward in a province in Turkey where children with thalassemia were hospitalized. Semi-structured interviews were conducted to collect data between October 2023 and June 2024. The data were analyzed using content analysis procedures. Max Qualitative Data Analysis (2020) programme was used to code the data.ResultsAs a result of the data analysis of this study, four themes and 14 sub-themes emerged. These four main themes were: "Emotions related to the caregiving experience," "Difficulties in managing the disease," "Mothers' need for support," and "Expectations and recommendations." In the section on expectations from nurses, mothers stated that health services should not be interrupted, that it is necessary to make plans against emergencies, and that they demand psychological support from nurses during this process.ConclusionThe results highlight the multifaceted challenges faced by mothers of children with thalassemia and emphasize the need for uninterrupted care, medication management, contingency planning and psychological support by nurses and health care providers in all circumstances. An understanding of such experiences, involving those distinctive to Turkey culture, is especially vital to inform the care of these children and enhance their quality of life.ImplicationsFuture research should explore practices for nurses to understand parents' psychosocial distress and coping strategies and intervene when necessary to provide support and guidance from the beginning of treatment and care.